Tag Archives: acceptance

So, is this going to be long term? 

Recently, I was asked the question, “Do you think this will be a long term thing?” This was referring to some recent concerning symptoms and I had made the request for a piece of equipment- a wheelchair that fits me and is lighter and more easily maneuverable. Now, anyone who’s ever looked at those things knows that they are not cheap, and so often the process for insurance approval is long. Now, my all seeing eye to the future was on holiday, so my answer to the doctor was “I don’t know.”

When I first got sick, I thought it would be a few weeks until it got better. Maybe a month. I never looked at my illness as “chronic” until I’d been dealing with it for the better part of six months. And even then, I wanted to avoid doing certain things because I was just going to get better. As of now, I’m still waiting. (Any day now, right?)

As my illness has gotten longer, and as it continues without a visible end, my perspective on many things have changed, as you would expect. One of those things is acceptance. I’ve been trying hard to love my body, without faulting it for it’s limitations. Of course, this is easier said than done. But one of the hardest things for me that prevented me from accepting my body that niggling fear that acceptance means giving up or giving in. That if I say, yes, this is the reality right now, that it means leaving behind the idea that I’ll ever get better.

My 18th birthday.
In my mind, at least recently, the idea of acceptance has changed. It doesn’t mean giving up the idea of ever getting better, or even the idea It means trying to move forward from the idea that me and my body are on opposing sides of a war that many days has no clear victor. It means focusing on the fact that my body has fought so hard to live and to thrive, and that I’m proud of it for doing so. I’m sure as hell going to continue to fight to be healthy. But I also will fight to live the best possible life I can in the body that has carried me this far, the body that despite all the craziness that has been thrown at it, is still going. And living the best life possible? That sounds like the furthest thing from giving up.

My service dog, Taxi, and I.

New Normal

If I could go back and tell myself one thing when I first got sick, it would be to find a new normal. And to try and accept the new normal.Sleeping all the time? That’s okay, that’s your new normal. Can’t walk without limping? That’s okay, it’s just a new normal. Using a wheelchair? New normal. Recently I was told to look into a new disorder, as a possible answer. I wasn’t phased at all, started doing research, and then it dawned on me…after almost 3 years of constantly being sick, this is my normal. And I’m okay with that. So if you’re just getting sick, or are struggling with something, find a new normal. Don’t forget the old one, but try not to expect your body to be capable of it. It’s impossible when everything changes, especially when that change is drastic- healthy, to sick, in a short time. I could have never imagined 3 years ago my normal would involve researching rare diseases, and administering meds through a feeding tube…but it does. My normal is not what I would have wished it to be, but it is one where I can live and thrive and be happy. “Normal” is after all, a very relative term.

And if your new “normal” feels not so normal at all, remember that you are not alone. And remember that things do get better.

After all, I’m certainly still here.

A letter to my disease

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Dear illness,

I never knew that you would come for me. We all know about illness, it is the elephant in the room. Yet somehow, we always assume it will happen to “someone else”. The trouble is, we are all “someone else” to the rest of the world. When I joined the ranks of those forced to shoulder you, I realized I couldn’t depend on this life happening to others.

You came at an unfortunate time. I was at the cusp of life, supposed to be healthy and free. No one who has not tasted this world for themselves imagines that someone who is this young should be sick. You aren’t fair. You aren’t right. But you are what happened.

And my life today is very different than that of my peers- but that’s okay. Because I have learned to savor the moments where I can breathe without pain. To walk when I can, and when I can’t, that’s okay too. You have taught me that sometimes crying is the only way to heal.

You took so much that I would give a lot to get back. You took my love of sports, my ability to eat, some days even my ability to move. You’ve taken so much more. And I hate you for that. But because of this, I am grateful for the little things. In a few years, those are the things I want to remember. How despite you, I found hope, and happiness, and joy. I have learned to find the silver linings, even when it never seemed to stop raining.

You’ve showed me how fast life changes, but you’ve also shown me how to live. That sometimes, you should take the hurt later if it means you get to walk on the beach. That when you are living seconds at a time because of how much it hurts, remember that you will make it out the other side. That live isn’t measured in years, and months, or even days, it’s measured in heartbeats, and kisses, and prayers.

So illness? Thank you. Because of you, I know what it is to be brave.

 

Sincerely,

The girl who’s kicking your ass.

This was also published on The Mighty.